PUBLISHED ON: 27 September 2021

When Pam was diagnosed with metastatic breast cancer in October 2020, she was overwhelmed physically and emotionally. She tells us what she’s struggled with, but also what she’s found helpful. 

Pam, an older white woman with cropped white hair, poses with her hands across her chest. She has a solemn expression.

 

They say you go to hell and back. But with secondary breast cancer, there is no back.

I was told I was cancer-free 

In total, I have now had four diagnoses of breast cancer. My first was at my first routine check after turning 50 in 2012. I had a lumpectomy in my right breast but didn’t have further treatment because no cancer was detected in the breast tissue removed. 

The second was in 2015. I had a lumpectomy in my left breast, followed by chemotherapy, radiotherapy, and trastuzumab (Herceptin). The next year, I had a recurrence in the same breast, for which I had a mastectomy with DIEP flap reconstruction. I received zoledronic acid infusions every six months thereafter. 

In 2017 I had a nipple graft, and after that I was monitored and received regular mammograms in the remaining breast every six months until April 2020. That check-up was delayed by COVID-19. 

In August 2020, I saw my breast surgeon and had all the usual checks. I was told that I only needed annual monitoring from this point, as I was cancer-free. 

The cancer spread to my skin, bones and lungs 

Just two months later, however, I noticed swelling, heat, and redness in my reconstructed breast, so I went straight to A&E because my local health centre was only operating remotely. After some consideration of infection and antibiotics, I arranged to see my surgeon. She confirmed my suspicion that this was to do with breast cancer and not an infection. 

The biopsy revealed another recurrence of my breast cancer, and a CT scan revealed that it was secondary. It had spread to my skin, bones, lungs and possibly spine. 

I began treatment shortly after and have been on it ever since. 

At first, I was treated with docetaxel (Taxotere), Herceptin, pertuzumab (Perjeta), and zoledronic acid. I’ve since come off the Taxotere because there has been tumour shrinkage and stability, but still have the Phesgo injection (which combines Herceptin with Perjeta) every three weeks. I also had one radiotherapy session a few months ago. 

Managing secondary breast cancer treatment is like a full-time job 

Mentally, I was all over the place to start with. I was trying to process the shock. 

I've never had any physical evidence of cancer before this: no lumps, no other physical signs of being unwell. In fact, the day before I went to A&E with secondary symptoms, I rode 26 miles. 

Apart from side effects from treatment, I have never looked or felt unwell with my primary diagnoses, either. I worked throughout all treatment and operations. But the secondary diagnosis, treatment and managing side effects floored me. 

The first four cycles of treatment were extremely gruelling. I lost my hair, my digestive system was shot to pieces, and at one point I tore a ligament getting into the car (which may have been related to side effects such as the weakening of my bones). I was off sick for six months and then decided to retire. 

Emotionally, I was mainly dealing with fear, anger and grief. To be honest, the first few months are just a blur. 

It is like a full-time job managing the appointments, treatments, self-medication, and practical difficulties of living with cancer. On top of that, you can see the impact on your family in their unguarded moments, and it really hurts. 

The main thing to deal with is the lack of control and overwhelming sense of powerlessness. You and your team have done everything possible to get rid of it, but it is a nasty insidious disease and it is back in your system. 

Before my secondary diagnosis, there was an end point to focus on and strive for, now there is just uncertainty and scan dread every four months. 

The Living With Secondary Breast Cancer programme provided some relief 

One of my breast cancer nurses mentioned Breast Cancer Now’s Living With Secondary Breast Cancer programme to me when we were discussing the need to use the words ‘living with’ rather than ‘dying from’. 

Experience has taught me to investigate every avenue of support available, because otherwise you risk dumping it all on your nearest and dearest. 

When taking part in the programme, it hit home that there are so many other women who are living with this disease while dealing with all the other things we juggle daily - but that helped me in a way. 

There are long-term survivors, inspirational people, and some very useful sessions on creativity and mindfulness. 

The most surprising thing for me was that, even though we are all in the same wobbling boat, just listening to someone else explaining exactly how you feel, or fear, does relieve the pressure. It gives you a break from all the explaining and reassuring, which can be so exhausting. 

I hope to continue taking part in Living With Secondary Breast Cancer 

Because of COVID-19, I have so far only experienced Breast Cancer Now’s support via Zoom, so I would be interested to know how different it can be face to face. However, I also think it would be nice to keep the virtual network going because of the national perspective it offers. 

When local groups start up again, I hope to join one while still checking in with the online network. 

For anyone who is living with secondary breast cancer, I would recommend signing up for a group so that you can see what you think. There is nothing to lose, plenty of help and solidarity, as well as lots of useful information and links. Plus, you can dip in and out of things as it suits you.

 

If, like Pam, you are living with a secondary breast cancer diagnosis and are interested in accessing more support, Breast Cancer Now offers both in-person and online support groups.

Support for secondary breast cancer